Some thoughts on advocacy

In our society today, autistic children and adults are publicly represented almost exclusively by non-autistic advocates; sometimes parents or other friends/family, sometimes medical professionals, sometimes others with their own particular reasons. There are, of course, an increasing number of autistic autism advocates, but they have a hard time gaining acceptance as “legitimate” advocates.

In fact, there are several bloggers and commentators who decry the fact that the most vocal autistic autism advocates are those with Asperger’s Syndrome, and that these “high-functioning” autistics can’t (don’t) speak for those with classical (or “low-functioning”) autism. Which brought to mind something I read a couple of months ago in Richard Farson’s book Management of the Absurd:

Suppose, for example, I were to post this question: “If you were asked to predict the group in our society that is most likely to mount a liberation effort to end its oppression, would you have greater probability of success by picking the group for which you feel most sorry, or the one for which you feel least sorry?”

If you employed the unconventional, paradoxical approach, you would have picked the group for which you feel least sorry. Liberation movements usually arise from groups thought at the the time to be perfectly content. That is why they so often have taken society by surprise. Earlier generations, for example, complacently saw Negroes as being happy in their place. Women, before the 1960’s, were thought to be on a pedestal, adored and provided for by men. And today, in spite of the efforts of child advocates to call attention to the often oppressive conditions of childhood, children remain in the public mind as carefree, fully protected, joyful in their innocence.

Next question: “From where is the leadership of those liberation movements most likely to come – from those most oppressed by the conditions or those least oppressed?”

If you said least oppressed, you’re beginning to get the idea. The leaders come from outside or from the margins of these groups, seldom from the most oppressed segments. African-Americans were most helped at first by white abolitionists. Gloria Steinem is hardly the most oppressed woman in America. Children are represented almost solely by adult advocates.

From this description it makes a certain amount of sense that those in the medical profession (psychology is part of the medical profession, right?) and parents were some of the earliest and most visible advocates, and even more sense that those considered “high-functioning” would lead the way for autistics themselves. What it doesn’t explain, though, is why medical professionals, parents, and others are so reluctant to include autistics in their advocacy activities.

In a later section of the book Farson also discusses the fact that, in general, the person or group most affected by a problem is in the best position to determine a solution to that problem. Experts (or, in management terms, consultants) may sometimes be needed to help, but it is the “afflicted” that know best what they need.

If anyone who doesn’t believe that autistics can act as autism advocates is reading this, I’d love to hear why you believe that. And why you think that parents, doctors, or other “experts” are better advocates for autistics than are other autistics.